I Have a Rare Disease, and I Am Not Sorry

I had an appointment with a new doctor this week for a routine visit, and of course my nerves were high. In preparation, I spent time updating my three-page printed medication and allergy document. I carry it with me always and it lists my physicians and their contact information, my diagnoses, the current medications I take, all of my allergies, the medications they can’t give me, and my many emergency contacts. This allows me to easily walk into any appointment or emergency room and immediately give them the information they need.

With my papers in hand, I nervously left, hoping for the best and that I would be met with understanding and openness and leave with someone who wanted to help me, to join my care team. As with most rare disease patients, I have some level of PTSD anytime I go to a new doctor after dealing with too many who never believed me, who made me feel like I was “crazy,” or worse, told me it was my fault. I can remember so vividly all the times I left an appointment in tears after being told what I was living was impossible — that it didn’t make sense so it could not be true, when I knew it was.

There were the many doctors who told me I didn’t have allergies and to eat the food anyway, a different doctor who told me I was lucky I had even found someone willing to marry me since I had so many problems, and yet another who told me I must have been abused and somehow forgotten when I shared what I now know is a common issue among my mast cell community. On those visits, I walked out of my appointment in tears, frustrated and beaten down, feeling misunderstood and like I had done something wrong. I often waited months to see a new physician, thinking they may be able to fix me or answer my questions, and when they didn’t, I would feel further defeat, knowing I had to start over.

It is of course no surprise that seeing a new doctor causes me stress and anxiety, as I never really know how open they will be to me. As I arrived at the office, I was already worrying about my first hurdle when I would have to decline the face mask they required everyone to change into. I explained my allergies and sensitivities and thankfully was allowed to keep my own mask on. In the room, the first question I was greeted with by the nurse was that the three-page document can’t possibly be true. How could I have so many allergies? As I paused, thinking about how to respond, the nurse seemingly realized her insensitivity and said, “That must be hard to live with.” A quick recovery, and I agreed it was a lot, but it was true. My comfort level was now minimal and I began to wonder if I made a mistake coming.

Thankfully, the doctor exceeded expectations. She was open to learning about me, shared many of her ideas and was also very honest about where she would need others to help. Then she said the best words a rare disease patient can hear, “I am willing to work with you and join your care team.”  I thanked her for her openness and then did something I do at almost every appointment — I apologized for being so complicated and such a pain to deal with. I realize now this is something I do without thinking. This revelation has not left me since. At what point along the way did I start to feel like I must be a burden and feel obligated to say “sorry” to any practitioner who is willing to work with me?

I am rare, I am complicated, I live daily with more symptoms and issues than most can imagine.  And while some things may never make sense, I don’t give up. I always advocate for what I need, search long and hard for supportive providers and work daily to heal. I do not need to apologize to anyone for my diseases or the challenges I face — not to any person and certainly any physician.

I know I am not alone in my feelings — so many in the rare disease world have felt this and still do. But I hope in time we all learn that we don’t have to be alone — that we can ask for help, trust our care team and feel worthy of their expertise and guidance without apologizing for it. I have learned that there will always be bumps along the way when a practitioner is not the right fit. But there will also be victories when you find just the right person to add to your team and help you heal. Next time, however, I have promised myself to skip the apology and simply say “thank you.”